The Gift of Life

Stephanie Freeman with her husband, Wayne. Stephanie donated a kidney to another patient so Wayne could receive one from a donor who was a match.

Written by Rosalind Fournier; Photography by Beau Gustafson

Two years ago, Marvin Wynn, a patient in kidney failure who had been barely subsisting on dialysis, regained his life. Along with it, he gained two new friends he now considers as close as family—the organ donors who played a direct role in helping him to receive a new kidney through the kidney chain program at the University of Alabama at Birmingham.

This is where it gets a little bit complicated, though not for the staff at UAB, where every day they use their expertise and complex algorithms to create chains of potential kidney donors and recipients.

Here’s how it works:

A patient like Wynn, who also has diabetes, learns that his kidney function is declining. Dialysis is his best option for now, but ultimately he will need a transplant.

Unless you’ve been there, it’s hard to fully understand the hardship and uncertainty a patient in these shoes faces. At any given time, roughly 100,000 people in the U.S. are waiting for a kidney transplant. Living donors—in many cases, family members or close friends—who want to help often fail to be matches (even among siblings, only one in four have a chance of matching perfectly). The waiting list for cadaver organs is notoriously long. Fifteen percent of people on the list die waiting.

Most patients go on dialysis while they wait, if their kidney failure is serious enough, but that’s no walk in the park, either. Wynn was on dialysis—a process which purifies the blood and performs the functions your kidney normally would—three days a week, for four hours per session. Some patients tolerate it better than others, but for many, like Wynn, it takes a tremendous toll. “For me, it was just trying to keep me holding on until I could get a kidney,” he says. “One day out of the week I would feel a little decent. The other six, I was so sick I couldn’t get out of bed. That’s basically how my life was for three-and-a-half years. My body was deteriorating.”

Into the picture came a friend of Wynn’s brother. The friend, who has chosen to remain anonymous, was already planning to become an altruistic donor—the term commonly (and aptly) used in the medical community for people who make living organ donations to complete strangers. Then he heard about Wynn. “My brother had mentioned that I was going through the process of trying to receive a kidney,” Wynn explains. “He told my brother, ‘Well, I want to give a kidney away. I’ve already been tested.’ And it was a blessing from God, because while our tissue didn’t match, by his offering a kidney, that put me in the kidney chain at UAB.” Things moved quickly after that—Wynn had several tests and procedures to go through himself, but within a month, he’d been matched by a woman who wanted to enter the chain and donate on behalf of a friend’s mother.

Marvin Wynn received a kidney after a family friend donated one on his behalf.

“So if my brother’s friend hadn’t offered me the kidney, I wouldn’t have been on the exchange list,” Wynn says, “and I wouldn’t have met this young lady whose kidney matched me perfectly. And that’s how it went from there.

“For me to have these two new people in my life is amazing, and to still have the friendship that we have three years later is just awesome. I feel like I have found a brother and sister for life.”

Making History

In the 2000s UAB began plans to grow its kidney transplant program through “paired” exchanges, essentially building chains of donors and recipients who were willing to enter the exchange even if they ultimately gave to or received a kidney from someone other than a loved one. Meanwhile, they also began laying the groundwork for the incompatible transplant program, which uses special drugs and treatments prior to surgery in order to make transplants that might otherwise not be matches become viable solutions for some patients.

UAB ultimately recruited Jayme Locke, MD, MPH, who received training in general surgery and multi-visceral abdominal transplantation at Johns Hopkins, as well as earning her Master of Public Health there.

“Without question, UAB has a long, successful kidney transplant program and was already doing great things when I arrived,” says Locke, who is now the surgical director of the Incompatible Kidney Transplant Program and coordinator of the UAB Kidney Chain. “It is definitely part of the reason I wanted to join the great team we have here. The kidney chain had not yet been realized, but there was great potential, and all the resources and people were here to make it happen.”

She was right. By 2014, the program made national news when ABC News’ “Nightline” featured the UAB Kidney Chain as it was about to earn the distinction of becoming the longest, ongoing, single-institution chain in the country with 21 patients having received new kidneys. By the end of last year, the number of donors and recipients who had participated in the chain was up to 134 and counting, with donors and patients coming from not only across the Birmingham region but throughout the Southeast and beyond.

Locke explains that since most living kidney donors come forward out of desperation to help a loved one, the first hurdle is preparing them for the possibility of discovering they’re not a match for that person—but that doesn’t have to be the end of the road.

“In general, individuals who come forward to be a living donor typically have a loved one in mind and are quite focused on donating directly to their loved one,” Locke says. “The concept of donating in honor of their loved one, instead of directly to them, does not typically sink in until the donor learns he or she is not a match—either through blood group or tissue incompatibility—for their intended recipient. In order to fully realize the potential of living donor kidney exchanges, we would need every single living donor-recipient pair to participate regardless of compatibility (with each other).” The key is that a donor can still make it possible for their loved to receive a kidney—even if it’s not theirs—by entering the chain and offering to donate a kidney to the patient who is their best match. It then opens the door for their loved one to receive from someone else.

An Emotional Roller Coaster

Stephanie Freeman, who donated a kidney on behalf of her husband, Wayne, in May of 2014, had no problem grasping this concept once it was presented to them.

Stephanie and Wayne’s story has been an emotional roller coaster since Wayne was first diagnosed with two different kidney diseases in in his early 30s. At the time, his kidney function registered at just 46 percent, but with some help from medication—and, frankly, what his own doctors called a miracle—his kidney function shot back up to almost normal and remained that way for almost six years.

But a scare like that, coupled with the underlying diseases, never truly goes away. So when Stephanie started to notice some ominous signs again, she was pretty sure she knew what she was seeing. “I had this nagging feeling,” she remembers. “His color was off, and he was getting nauseated when he ate. I said, ‘Wayne you just don’t look right. I need to call the doctor and see if we can get you in.’”

His kidneys were failing again. The Freemans, who live in Brookwood, Ala., came to a nephrologist here in Birmingham, and he was on dialysis within months. Then Stephanie got a call out of the blue that seemed like the answer to their prayers. “An old friend from high school that Wayne had not seen in 20 years actually contacted me and said, ‘Stephanie, if you think I might be a match, I’m happy to be tested and give Wayne a kidney if I can.’” He did turn out to be a match—and he may well have ended up being Wayne’s donor, except Wayne was having some issues that delayed the process, and once they were resolved, his friend was having some health issues of his own. It felt like a race against the clock, and Stephanie was afraid they were losing valuable time.

“So I said, ‘Let me be tested.’ I knew I wasn’t a match for him, but I also knew there was a donor pair program through UAB, and I hoped they could work it out to where he would get a kidney from somebody and I’d be able to give to somebody. And after that it happened so quickly, I could not believe it. I was called and asked to come in and be tested on March 17, 2014, and Dr. Locke asked me, ‘If we found a match for you guys next week, would you be willing to have surgery?’

“I said, ‘Absolutely we would.’ Literally the next Monday we got a call: ‘We found a match.’”

Donors and recipients are not allowed to meet or learn anything about each other until after the surgery, and even then, they are only introduced if both parties want that (they almost always do). Stephanie was perfectly fine with that. “I knew that whoever received my kidney needed it just as much as my husband did,” she says, “and there were people who loved that person and just wanted them to be well.”

The surgeries went beautifully, and they did, in fact, meet their respective donor and recipient the next day—two college-age brothers whose spirit for life inspires Stephanie whenever she thinks about them. “I keep a picture of them, and when I’m having a bad day, I look over at that picture and I’m reminded of how blessed we are,” she says.

Most importantly, Stephanie has her husband back. While they follow all the protocols carefully, she no longer feels the constant panic about his diet and every tiny detail that haunted her while Wayne was on dialysis.

For her part, Stephanie can’t even tell she’s one kidney lighter than before. “There is no difference,” she says. “When you are healthy, and you are able to give to somebody who is not healthy, I would encourage people not to hesitate. We have such a long list of people waiting for kidneys, and what a difference we could make in somebody’s life.

“I truly wish that I had another kidney that I could give to somebody—and I think anybody who’s been part of this kidney chain or ever been a donor would say the same thing,” Stephanie adds. “I am so grateful that my husband received a kidney, and I am also extremely grateful that I got to play a very small part in helping somebody else live a normal life again. I would do that again in a heartbeat.”

The Altruistic Donor

Divyank Saini does not have a story about a parent, child, sibling or friend who desperately needed a kidney transplant to survive. He simply knew there were a lot of people in the world—including many in our own community—waiting and hoping for a kidney transplant, and he knew he could help.

Divyank Saini, who works in the organ-transplant lab at UAB, saw the need and decided to donate

Working in the organ-transplant lab at UAB, Saini was also better educated that most about the facts. “I had been exposed to this idea of organ donation in my studies as a medical technologist,” he says. “And I did my own research about what happens in organ transplants and what the waiting list is like—and what patients, especially kidney patients, go through in dialysis.” He’d seen it, also, up close. “We see a lot of people go through that process. And unfortunately, a lot of people are still on the waiting list. I wanted to help at least one. So I just asked myself, ‘Is there a reason for me not to donate?’ And I couldn’t think of one.”

Saini says that prior to surgery, the team prepared him well for everything to expect, and he was thoroughly tested for any complications. “There is always the fear that surgery might go wrong or something like that, but I’ve been part of UAB and seen how UAB works, and I knew I was in good hands,” he says, “especially with Dr. Locke, who did my surgery. So that helped me out tremendously.”

Saini’s surgery did go smoothly, and a day or two later he was ready to meet his recipient. Typically everyone in a four- or five-person cluster of transplants that occur together is invited into a room to finally meet face to face, and rarely is there a dry eye.

Saini’s experience was no exception. “It was just a very emotional, beautiful moment,” he remembers. “We were all in that room sharing our stories and giving gratitude, and it was very emotional for me to see the impact that I had. Because I work in the lab behind the scenes most of the time, I don’t see patients very much. I don’t get to see the human impact. But in that room, I saw all that manifest. I saw the emotions and humanity of what we do.”

Physically, Saini feels better than ever. “It was like the surgery never happened,” he says. “The only thing I have is the remnant of a scar on my belly.” As for his recipient, she is like family now. “She’s a grandmother, and she’s by far the funniest, liveliest person I’ve ever met,” Saini says. “She’s just awesome in every way, and when she talks to you, she makes you feel like you’re the most important person. And I’m glad my kidney went to her. I know she’s going to take good care of it.”

These are the conversations that help spread the word and keep the chain going, Locke says—when someone knows someone who knows someone whose life was forever changed by the kidney chain and plants the seed in another potential donor. “The secret sauce, if you will, is the community,” she says. “There is a profound sense of selflessness and altruism in this state and at this institution. It’s like nothing I have ever experienced before. People are actively engaged and view helping their fellow man as an obligation and duty.

“It is the accumulation of these selfless acts that makes the chain possible and keeps it alive.”